12/05/2012

This post will be long, so bear with me, because there are many important points to cover...

As many of you know, we have a petition that we started on Change.org which can be found here:Shame On You Dr. Drew
The petition caused a major movement that was on the brink of starting anyway due to Jennifer Esposito's treatment from CBS over her inability to work full time.

When I took the initiative to start the petition, I did so because of my family's own frustrations without considering that it would take on a life all its own with people who were in agreement and not in agreement on our position. Naive as that may sound, all I knew was that in all of my events and meetings I had heard a resounding echo from celiac children and their parents about their own frustrations in navigating a health care system that was slow to catch up.

That isn't to say there aren't physicians and dietitians that have devoted their studies and time to helping those with their ailments. Of course there are the more well-known: Dr. Alessio Fasano of the Center for Celiac Disease, Dr. Peter Green of Columbia University, and my local favorite, Dr. Ivor Hill, of Wake Forest Baptist Health.

Being that we take the stance in our R.O.C.K. groups to positively face the challenge of gluten free and the challenges of celiac disease, I also understand fully the power of remaining positive on the situations at hand...

But, when I was told that there were people who felt adamantly that my petition and Jennifer Esposito's campaign were offensive because they felt it made celiac disease into a disability and had taken celiac disease awareness a step backward, at first I took offense. I can understand their point on a certain level based on positive thinking only.

But, is it possible to always remain positive?
Is it healthy for anyone to completely sweep their less positive feelings to the side and keep a smile on their face no matter what?

You see, I believe that the grief process is a healthy step to embracing a more positive attitude in the end. When we experience a loss, be it through death, illness, or even food, there is a grief process which happens.

As quoted from Psyche Central: "Coping with loss is an ultimately and deeply personal singular experience — nobody can help you go through it more easily or understand all the emotions that you’re going through. But others can be there for you and help comfort you through this process. The best thing you can do is to allow yourself to feel the grief as it comes over you. Resisting it only will prolong the natural process of healing."

I have watched my daughter fluctuate through the seven stages of grief many times over. They were more pronounced when she was new to being diagnosed and it seemed to her that her world had been discombobulated beyond her comprehension. The constant marketing directed at children makes the process even harder for them to accept, in my opinion. Not to mention, they are trying to figure out who they are and are suddenly thrust into being different. But, I have seen the same process revealed for adults, especially at the Holidays when family gatherings take place and food is presented that they can not eat. But even more than that, the loss of abilities to be a normal, healthy person who, as Dr. Drew so mistakenly surmised, is "OK now that you are gluten free", sent a shock-wave of anger through many people.

The best post that was inspired by our petition that made me impassioned to write this post was Debbie Simpson, author of Adam's Gluten Free Surprise, No More Apologies Dr. Drew and I recommend that as a Must-Read.

I personally thank everyone who have signed our petition, but more than that, those who have left hundreds of comments from all over the world about their personal struggles with diagnosis and the disconnect they have felt with the medical community at large. I cannot count how many times that a person has written that they AREdisabled by refractory celiac disease or leaky gut syndrome due to years of misdiagnosis. The numbers are seemingly higher than reported or discussed within our own celiac community.

If it weren't a type of disability, then why are our children allowed to file a 504 Plan with their schools?
If you are afraid of being labeled as having a disability, will there ever be change in the medical community awareness?

As a result, I will no longer take the stance that positive is the only way to deal with someone and their grief from losing their health or gluten in their lives. To do so, would be discounting others and the stage of acceptance they are in or coming to. If you feel differently, I welcome your comments to me in an email. I may not agree, but I will always remain open and listen.

But back to the point I tried to make with the petition in the first place: We need more diagnosis and not sweep that under the rug either. We have an opportunity, as Jennifer so correctly stated on Twitter, to come together as a community and expect change to happen rather than argue among one another over semantics of our purpose. I hope you will join us.

24 comments:

I have only made it as far as "they felt it made celiac disease in to a disability". Being a celiac, and mom of 2 celiacs, I take offense to that. Why? Celiac Disease IS a disability, and seen in the eyes of the ADA as such. People that downplay the severity of this DISEASE are the one's who ultimately hurt us, especially us older one's with far more complications for long term lack of diagnosis.

As an adult with CD, until reading this, I never considered it a disability. Just a crappy disease that I'm stuck with. I can see both sides of the coin, and everyone has their own opinion on this subject. :)

By definition standards:Disabilities is an umbrella term, covering impairments, activity limitations, and participation restrictions. An impairment is a problem in body function or structure; an activity limitation is a difficulty encountered by an individual in executing a task or action; while a participation restriction is a problem experienced by an individual in involvement in life situations. Thus disability is a complex phenomenon, reflecting an interaction between features of a person’s body and features of the society in which he or she lives.[2]An individual may also qualify as disabled if he/she has had an impairment in the past or is seen as disabled based on a personal or group standard or norm. Such impairments may include physical, sensory, and cognitive or developmental disabilities. Mental disorders (also known as psychiatric or psychosocial disability) and various types of chronic disease may also qualify as disabilities.Some advocates object to describing certain conditions (notably deafness and autism) as "disabilities", arguing that it is more appropriate to consider them developmental differences that have been unfairly stigmatized by society.

So is it for fear of a label considered disabled that some don't like the word?

That could very well be true. I just never considered myself, an adult, "disabled" because I can care for myself. Children and the elderly, now that's a different situation. I hope things get better by the time my kids put me in an elderly home!!! :)

Yes I do too, from what I have understood Senior facilities are the pits with handling gluten free!I don't look at my daughter and consider her disabled, but I know there was a period of 2 years where she needed to heal and missed tons of school because every cold and flu was passed down the pike to her. Her immune system was very fragile. But also, I hope none of us need hospitalization at any point like Debbie's son did, that story was frightening.

As someone who already had other disabilities before finding out I couldn't eat gluten (I'm hearing impaired and have a 10% physical disability rating from the VA from injuries suffered while serving the Navy), I have no problem with the idea of calling celiac disease and non-celiac gluten sensitivity a disability. For me, I see it as a way of making others realize the seriousness of our condition. Even though CD and NCGS are not, technically "allergies" how many of us have, for the sake of brevity and to impart the seriousness of our condition said, "I'm allergic to wheat/gluten?" We all seem to have experienced that reaction from some ignorant person if we say we have an "intolerance" or a "sensitivity" to a food that "a little bit won't hurt us."

And you're right about senior facilities and eating gluten free. While she hasn't been diagnosed (in part due to a reluctance to pursue it), I'm sure my mother has some form a gluten intolerance (I have two copies of the gene associated with gluten intolerance so I know I got one of them from her). She has tried on several occasions to eat the gluten free breads and pizza's they serve at the assisted living facility where she and my dad live and said they were awful. So, despite the fact that I know she would feel better on a gluten free diet, I know she will probably never eat that way.

And thank you for starting the petition. I made sure to sign it and to encourage others to do likewise.

I did hair at a Senior Facility that was posh and had a Chef doing their meals. The sheer amount of gluten options to me was appalling, so I asked him one day about GF and why he didn't just make the soups, etc. GF so everyone could eat them. He had no answer for me except his traditional training was heavy in gluten as a French trained Chef. There is a huge disconnect in medical facilities at large and I think we should as a community try to bring that change about.

I've supported your petition and I continue to support you and your thoughts as expressed in this latest post. I have Polycystic Ovarian Syndrome (PCOS), Fibromyalgia (including the IBS that comes with it and everything else), and PTSD. Due to the IBS, I've take a LOT of stuff out of my diet just to try to keep myself functioning at something remotely resembling a normal level and this includes dairy and gluten (as well as a number of other additives). Grieving IS part of the process and it IS tough around the holidays especially. It's hard for me as an adult to stay positive sometimes, so why should we demand this of our children? I'm fortunate enough to have a Fibromyalgia doctor who supports me really well when it comes to treatment and diet options. Not everyone is this fortunate. We've come a long in recent years, but we still have a very long way to go. Many kudos to you for standing up and speaking out!Vicki C.

Vicki,Thanks so very much for speaking out as well and sharing your story with us! I also have Fibromyalgia and have had it for going on 12 years. Taking gluten out of my diet 5 years ago has helped, but if I strain myself or get extremely stressed, it comes back with a vengeance. Having high energy as a person, it is difficult sometimes because I want to do so much more than my body is able to physically achieve and to be honest that irritates the heck out of me!!! So I get not wanting a label and feeling anger over the inability to do what I want when I want. This more than likely helped me see this point of view before others may. In any case, thank you so very much for supporting our petition as well!Many thanks,Nikki

I am so glad I was finally able to have time to read this. I think many (as I am) are apprehensive to 'label' themselves as disabled. Heck, there are many in wheelchairs, who wear hearing aides or require other assistance who refuse to label themselves as 'disabled' - and why? - because they are still 'abled' - just in a different way. Maybe it would help to use the term "differently abled". But it is this label that has brought laws that make it possible for those who are differently abled to be included and treated fairly. Those of us who are "differently abled" when it comes to diet need to have our needs recognized and met. Can you imagine a child in a wheelchair being forced to take classes on a second level without a ramp or elevator? - As sad and as wrong as we know this to be - it would continue to happen if not made illegal to do so. But why is it o.k. for schools to not be required to offer safe meals to our kiddos who are differently abled with their diet? or (even more astounding) to be required to properly feed patients in hospitals who require special diets. Give someone penicillin when its clearly in their chart "allergic to penicillin" and you're asking for a law suit. Give a person with celiac gluten and - what? "oops.... sorry" (if you get anything at all.) So if it takes a label ?? food for thought, for sure.

Nikki -- I was in a situation very similar to Jennifer E's; unfortunately, however, I did not know until a job loss that I am VERY gluten-intolerant and most likely have celiac disease (dermatitis herpetiformis is/was one of my many formerly mysterious conditions!) The constant, unrelenting fatigue, bowel issues, anxiety, depression, migraines, stomachaches, etc., along with fibromyalgia and (severe) clinical depression, not to mention constant viruses due to a poor immune system, and on and on, are why I lost my job. But how to prove now...? Too late, I'm afraid, and I'm keeping busy enough just learning how to cook and eat all over again. I totally feel for your little Erin. After watching the Dr. Drew segment, and having loads of empathy for Jennifer E., I just want to say to you and Erin (1) you are not alone, (2) "Dr." Drew is board-certified, but so are many other quacks and intellectuals" with absolutely no bedside manners (awareness of and consideration for patient), (3) this "Dr." Drew, in my opinion, is 99% television "personality" [i.e., isn't qualified to do anything else], .999% insensitive moron and egomaniac, and .001% doctor. I may or may not sign your petition (probably too late anyway), but if I don't, it won't be because I don't agree with you 100%; it will be because I think anyone who relies on Dr. Drew for medical advice (meaning his regular audience, not you) is a waste of your time and energy to try to convince otherwise. I see on Wikipedia that Dr. Drew is apparently well-known for being on the offensive when it comes to others' medical issues -- IMHO, his producers are well aware of this and, in fact, probably encourage it b/c people love to watch other people argue for some idiotic reason. Erin, sweetheart, you just keep your chin up and keep speaking the truth to the doctors and others who will REALLY LISTEN to you and your mom and the rest of us. OXOXOX

Jean,Thanks very much for commenting. I am so sorry you lost your job due to illness. I think this happens more to many that are ill than we realize.

But in all honesty, this petition has become more to me than just about Jennifer's interview. After reading the hundreds of comments that have been made about the disconnect between them and the medical profession, it has become about there being no more excuses for their behavior. Whether it is Dr. Drew, or Dr. Who - the reality is we should absolutely expect more from them! If I had a dollar for every celiac/gluten sensitive person who had the same story to tell of misdiagnosis and bad medical advice, I would own the beautiful farm down the road that I claim is my dream house. It has to stop!

I am glad Erin is taking after her mother although it is lonely sometimes being the advocate and fighting the good fight. This time I don't feel so lonely with over 2,100 backing me up so far. However, those opposing can blame my mother for being an activist also:) She could have taken the same stance with the medical profession when my brother died in a car accident. Instead, she fought until almost all hospitals had a Patient Liaison to be able to communicate with a family in a trauma center. Today, they have them for every family in every hospital...So, sometimes it matters more than anyone can comprehend that we don't give up. (I think you just helped inspire another post)

Thanks so much for posting Jean and I hope you will still sign our petition:) Much Love,Nikki

Thanks so much Debbie. It has been a long time, he was 17 and I was 10 yrs old. But, I still think of him sometimes and wonder who and how he would be today which is probably very normal. My mother went on to also start the first support group extensions of Compassionate Friends in North and South Carolina. That is why I also had the insight to want to start R.O.C.K. Charlotte for Erin because I recognized this grief process in her as I had seen in my mother's groups. By the time I was 14, I was a peer counselor in school. So I do not believe that everything happens for a reason as some people say, but I do believe horrible things can turn into positive things if we take the opportunity to make them so:)Nikki

I've tried to deal with it from the Polyanna point of view that many holistic folks tout, "don't label yourself". You know, that only goes so far. Labels can be helpful as well as harmful. It's a fine line to walk, just like everything in life. Yes, we are sick. For some it can be extremely debilitating. We need acknowledgment and understanding; and we need a helping hand. No, Celiac Disease or leaky gut or any auto-immune issue or disease does not define us. We aren't helpless. We can improve our health, but chances are that we will struggle with symptoms for years even after we have made changes to our diet. When I say I have been diagnosed with a disease, it doesn't take my power away.

People with Celiac Disease can choose how they want to approach their own health, but I don't think it's fair to protest this petition that is asking for the show to give accurate information about Celiac (as well as asking Dr. Drew to apologize for his terrible manners).

I know everyone fears for their employability, but if we don't inform the public about this disease, it only fosters over-reaction, misunderstanding, and/or ignorance . We need to protect people with illnesses in the workplace. Just because a person isn't the picture of optimal physical health, doesn't make that person obsolete in the workforce; but it may very well call for adjustments in the job. Frankly, it would be a slim workforce if anyone with an chronic illness or disease got fired because most people have a health concern, will have a health concern, or are trying really hard to hide a health concern to avoid getting fired (which by the way is terrifying and creates an unhealthy amount of stress).

I support this petition, but I also see that this is about more than Celiac Disease. It's about the medical institution's failure to treat their patients effectively and with respect. It's about money. That's a long story that I'll refrain from expanding upon. It's about stigma for those with chronic and invisible illness. It's about employers violating the rights of those with disabilities. Disability is a scary word to employers and employees. Employers have to abide by the laws and employees have to be hyper-vigilant if they are disabled or become seriously ill during their employ. The term disability has some big lawyerly definitions I'm sure, but the whole point of the word is to protect vulnerable individuals and provide reasonable accomodations for their special needs.

I've tried to deal with it from the Polyanna point of view that many holistic folks tout, "don't label yourself". You know, that only goes so far. Labels can be helpful as well as harmful. It's a fine line to walk, just like everything in life. Yes, we are sick. For some it can be extremely debilitating. We need acknowledgment and understanding; and we need a helping hand. No, Celiac Disease or leaky gut or any auto-immune issue or disease does not define us. We aren't helpless. We can improve our health, but chances are that we will struggle with symptoms for years even after we have made changes to our diet. When I say I have been diagnosed with a disease, it doesn't take my power away.

People with Celiac Disease can choose how they want to approach their own health, but I don't think it's fair to protest this petition that is asking for the show to give accurate information about Celiac (as well as asking Dr. Drew to apologize for his terrible manners).

I know everyone fears for their employability, but if we don't inform the public about this disease, it only fosters over-reaction, misunderstanding, and/or ignorance . We need to protect people with illnesses in the workplace. Just because a person isn't the picture of optimal physical health, doesn't make that person obsolete in the workforce; but it may very well call for adjustments in the job. Frankly, it would be a slim workforce if anyone with an chronic illness or disease got fired because most people have a health concern, will have a health concern, or are trying really hard to hide a health concern to avoid getting fired (which by the way is terrifying and creates an unhealthy amount of stress).

I support this petition, but I also see that this is about more than Celiac Disease. It's about the medical institution's failure to treat their patients effectively and with respect. It's about money. That's a long story that I'll refrain from expanding upon. It's about stigma for those with chronic and invisible illness. It's about employers violating the rights of those with disabilities. Disability is a scary word to employers and employees. Employers have to abide by the laws and employees have to be hyper-vigilant if they are disabled or become seriously ill during their employ. The term disability has some big lawyerly definitions I'm sure, but the whole point of the word is to protect vulnerable individuals and provide reasonable accomodations for their special needs.

why does this become an issue about being labeled a disability or not, when Dr Drew's interview was arrogant and dismissive of Celiac disease. He was obviously ignorant of the seriousness of Celiac and Leaky Gut and he discounted the ravages of undiagnosed or misdiagnosed Celiac and called her nutrition deficit and dehydration collapse just a matter of 'passing out' from diarrhea.

I take offense to it as I am gluten intolerant and have fibromyalgia and because her illness is not visible like mine (re: his quote that she looks like she has everything as a celebrity) his comments and interrupting her perpetuated the intolerance and disbelief that Celiac (or any other outwardly invisible illness) is a true disease.

There always are people who can't see intolerance and ignorance for what it is, and the damages that mindset perpetuates. Those who are objecting to the petition are just those folks.

I,too, see the danger in brushing it under the rug. I mean, look at our community dividing over the very same issue!

There have been many arguments made including one that popped up yesterday when someone said, "She's a multi-millionaire, who can afford all kinds of household and medical help. I do feel bad for her, but what about all us other "regular" people who have to keep plugging along no matter what. A lot of us work 10-15 hour days, take care of our families and households, and donate time to charities, causes, and churches."

Now, I can see all kinds of things wrong with that comment, but I think we are facing that issue as well, which is sadly reminiscent of a certain political stance I have seen form against healthcare issues. The "I take care of me and you take care of you" refrain...the problem is, who is there at the end to be a voice for those who cannot speak for themselves?

Isn't this the kind of cause that we should all take a stance on because the Dr. Drew/Jennifer episode opened the door for us to be able to take a stance on it? I said it in response to that comment, and I say it again here...This is not a personal crusade against Dr. Drew or for Jennifer Esposito. It is about coming together and collectively making a change for the better!

Hi Nikki,I don't have Celiac, nor do any of my family members or close friends. I do know some folks with it, though, and hearing them detail what they go through on a daily basis (i.e. at the grocery store) is more than enough to convince me that this disease needs more attention.After waking up at age 7 with my father diagnosed with MS, which he lived with for 20+ years, I wish I could have understood everything going on inside him - physically, mentally, emotionally. I could not. For me, there was no greater difficulty than to be so young, on the outside looking in, and feel humbled by the experiences of my dad. There were so many people who looked at him funny for carrying a cane, and a few who were wondering why he had a handicapped license plate. And then in college people were still wondering how he could afford to send a couple kids to school without a job (thank god for long term disability).It's beyond belief and beyond stupidity that anyone who has seen a close family member or close friend go through something like this to seriously say to you that you don't know what you're talking about, no matter what the condition, syndrome, or *disease* is.I just wish there was a way for me to sign your petition one million more times.

Katie, how do you know you don't have celiac disease? I think everyone should be tested. Did you know that 24% of first degree relatives of MS patients have celiac disease, according to recent research in Spain? Some with celiac report not having any symptoms at diagnosis, but report feeling much better after going gluten-free.